Living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID can transform every aspect of life, including one that often feels too delicate or taboo to address: sex and intimacy. These conditions introduce physical limitations, emotional strain, and communication challenges that can make intimacy feel out of reach. But here’s the truth: intimacy is possible—it just looks different, and that’s OK!

Understanding the impact of ME/CFS and long COVID on intimacy

Both ME/CFS and long COVID share symptoms like post-exertional malaise (PEM), profound fatigue, chronic pain, brain fog, and nervous system dysregulation. These symptoms can deeply affect libido, physical comfort, and the emotional availability needed for intimacy.

• Limitations: Fatigue and PEM can make physical activities, including sex, overwhelming or even impossible at times. Pain, hypersensitivity, or muscle weakness may also affect comfort, positioning, or desire.
• Medications: Medications used to manage symptoms, such as propranolol or guanfacine, may further suppress libido or cause side effects.
• Mental and emotional barriers: Feelings of frustration, grief, or shame often accompany these conditions, impacting self-esteem about how your body has changed and the ability to connect with a partner.
• Communication struggles: Discussing these changes can feel vulnerable, especially if partners have different expectations or levels of understanding about the illness.

Redefining sex and intimacy

For people with ME/CFS or long COVID, intimacy might not look like it used to, but that doesn’t mean it has to disappear. Here are ways to redefine intimacy and make space for connection.

• Broaden the definition of intimacy: Intimacy isn’t just about intercourse; it’s about connection, vulnerability, and shared moments. Holding hands, cuddling, making eye contact, or sharing meaningful conversations can be profoundly intimate. By expanding the definition, you can find new ways to bond even when physical or sensory energy is limited.
• Prioritize communication: Open, honest communication is essential in any relationship. Talk with your partner about how your condition affects you physically and emotionally, and work together to set realistic expectations. Phrases like, “I love you, and I want to connect, but today my body needs rest,” can bridge understanding and keep the focus on mutual care.
• Adjust expectations and explore alternatives: Intimacy doesn’t need to follow a script. On low-energy days, light touch or massages might feel better than more physically demanding activities. On better days, you might experiment with positions or settings that prioritize comfort, like lying down together or using supportive cushions.
• Embrace adaptive tools: Using tools like pillows for positioning, sensual aids like blankets, or sex toys to decrease physical exertion can make the experience more enjoyable.
• Practice self-compassion: Living with ME/CFS or long COVID often requires mourning the loss of what intimacy used to look like. It’s OK to grieve that and to give yourself grace as you find new ways to connect. Remember, your worth isn’t defined by what you can or can’t do sexually.

Strategies for rebuilding intimacy

Building intimacy when managing a chronic condition often means taking a proactive, creative approach.

• Create a sensory-friendly space: Many with ME/CFS or long COVID are sensitive to sensory inputs like light, sound, or touch. Create a calming environment by dimming lights, playing soft music, and using gentle fabrics. Eliminating sensory triggers can make intimacy feel more inviting.
• Focus on slow, intentional touch: Instead of rushing, prioritize slow, mindful touch that allows your nervous system to relax. Practices like non-sexual massage, cuddling, or simply resting a hand on your partner can foster closeness without draining energy.
• Use energy planning and pacing: For people with ME/CFS or long COVID, energy is a precious resource. Plan intimacy during times when you feel your best and incorporate plenty of rest before and after. This might look like scheduling intimate time on a day when other demands are minimal.

Navigating intimacy as a couple

If you’re navigating intimacy with a partner, teamwork is key. Here are a few tips:

• Be patient: Chronic illness changes things for both partners. Patience and empathy go a long way in maintaining a strong connection.
• Educate yourself: If you’re the partner of someone with ME/CFS or long COVID, take time to learn about their condition. Understanding their experience can foster deeper empathy and support (and be pretty darn sexy!).
• Focus on emotional intimacy: Emotional connection often leads to greater physical intimacy. Take time to share your feelings, talk about your day, or revisit memories that brought you joy.
• Celebrate small wins: A good day doesn’t have to mean you achieve everything. Celebrate small moments of connection and progress.

A final note

Sex and intimacy with ME/CFS or long COVID require patience, creativity, and self-compassion. It’s OK if things look different than they used to. You are still deserving of connection, love, and pleasure—on your terms.

Let’s keep the conversation going. Share your thoughts or experiences in the comments or connect with me directly to learn more about navigating intimacy with chronic illness. Together, we can redefine what intimacy looks like in your life.

Teacher Byrd is a sex education and relationship coach.